Motherload

 

It’s equal parts love and loss, hope and fear, exasperation and care.

It’s heavy, this load mothers carry.

At first, it’s a gently moving tiny thing in your belly. A flutter of foetal fondness, the quiet beginnings of a whole new world. There might be a portent of things to come, as you grip the toilet bowl and heave into it. Maybe at some soul level it is a recognition, and the shock of it makes you suddenly sick. There might be an inkling that things are going to change in a big way as you find yourself asleep on the sofa before dinner, too tired to manage adult conversation. Your partner is suddenly solitary, watching their own shows, doing their own thing. Perhaps neither of you thought pregnancy would be like this.  Maybe at some emotional level it, too is a recognition. You are going on a journey that even they can’t take with you; the slow drip of anaesthetic starts early, numbing the sadness of all the ways becoming parents can change a relationship.

And the moment after the birth, when you gaze over the precipice into your baby’s eyes, there is a knowing made broad by the pain of labour, a realisation that something has begun, something unmappable, unfathomable. Something that will probably take all of you, more even than birthing this baby did.  In that moment it is clear that there is no pathway back to the land of before-motherhood. So you step back from the edge, sure that if there was such a thing as a life’s purpose, yours has been decided. You are a mother: you lift that feather-light load into your arms, and balance the responsibility on your shoulders, squaring them to the future.

I could bleat on about what they don’t tell you about motherhood, but it wouldn’t change anything. The truth of the matter is that motherhood, for me, and for millions of women like me, didn’t come naturally. I didn’t take to it like a duck to water. I couldn’t smile beatifically with baby on hip whilst I simultaneously slid a tray of buns out of the oven. The early years were jaw setting, teeth gritting, mind numbing tedium. I tried so hard to do it well. It mattered so much to me for it all to be just perfect. But I confess, I was a mess.

And all the while I’ve been mothering, trying hard to keep my ducks in a row; my career was stagnating, seeping into the nether. My body, altered for ever. That’s okay, you and your sisters-in-arms tell yourselves, because you recognise that mothering is an Important Thing. The type of humans you are unleashing on the world is an enormous responsibility. So you think deeply about what that means, and make detailed observations about character development, values, ethics… chore lists. You try, every dinner time, to incorporate conversations that go beyond the staples of mashed vs. smashed potatoes. Your greatest goals are for consistency and citizenship.  You are a serious mother. You heave another layer of significance onto your burden. You won’t let society down, no sir. Your kids will be a gift to their world.

Sometimes, after dinner, scraping the food you only just put onto the plates, off the plates; your inner self crouches at the clifftop, eyes drawn deep down into the abyss. And when you are applying the toilet brush again, to poo skids that aren’t your own, or scraping up vomit, or fielding a phone call from a teacher about behaviour issues, or discussing playground politics, or staring at a pile of washing that seems to be stuck on a universal glitch, repeating ad infinitum… in those times, there is a yawning emptiness that tears apart the space time continuum. Threatening to pull you in. You can see something on the other side of the abyss. It seems nicer than where you are. And you know you need to resist it, the same way you need to do everything else.

Because if you don’t, who will?

In those times, the leaden weight of what you have taken on threatens to topple you.  Your well meaning single friends will tell you to take a load off. Leave it to them! They say.  They’ll manage!  Take time for you! And you nod and tell them they are right, but your inner self is shaking her head and scoffing at you. Sure. Uh-huh.  And when you return after they’ve been left to do it for themselves, who cleans it all up? Who makes it possible for the routines that keep things functioning?  Who mops up the tears and has the conversations that need to be had? No, there is no respite from this choice you made. It isn’t a part time job. It’s equal parts love and loss, hope and fear, exasperation and care.

You carry it with you.  It is you. It’s not simply what you do, it is who you are. It’s the motherload.  Sometimes, the heaviness is not joyful and I do not feel grateful for it. I know I probably should. There are so many people I know who yearn for this. Or they think they do. I wonder if they would if they knew both sides of this blissful burden?

I write this in open honesty. I write it because I know there are other mummas out there dealing with this heaviness of heart. I don’t write it because I dislike my children, no, my love for them is fierce, my whole life is an example of what I would do for them, because I do it.  They know my heart, by heart. I write it because I need to acknowledge that it is hard. I guess I just want to say that.  In this world of carefully curated images of motherhood. My own is messy. I do my best. I hope it will be good enough, in the end. That my contribution to the world will be worth all the sacrifice, soul searching and sheer grit.  But it’s a heavy load alright.

What are your thoughts on this?

No Harm

Four years ago, in a neurology outpatient’s waiting room, somewhere in the southern hemisphere…

I’m your eighth patient today, here in this clinic.  Before that, you were doing ward rounds with your students, you’ve barely had time for lunch.  I don’t know this for fact, but I know you’ve seen a lot of patients from the slump in your shoulders, the way you don’t look up when I am too slow to follow directly behind you into your space.  You finish reading something on your computer, maybe it’s my record. You push your keyboard away, sigh and swing your gaze towards me. It rests on me for a nano second.  Then it flits to somewhere over my left ear. Your brain is busy, I can see that. Who knows what thoughts are travelling through your mind?  Not me. But I try to guess, trying to read your body language; trying to find the right way to talk to you based on the incomplete information in front of me.  My first instinct is to apologise to you, for making your day busier.  I give myself an internal faceslap. Your time is valuable, it’s true.  Mine has no monetary value.  The numbers a neurologist like you can earn are a reflection of your worth. But that thought doesn’t seem to cheer you.  You rub your temples and say:
“Exactly why is it you are seeing me!? You POTS people don’t need a team of physicians, you know.  A cardiologist should suffice.”

I’ve been waiting a long time to see you.  Hoping that seeing you is going to make a difference.  I hear you have a brilliant mind, that you might be able to help me. Waiting for this appointment has kept me going.  I know that my medical history is long. I know that the things that have been going wrong for me don’t seem to add up.  I know that I bring my burden of hope and lay it at your feet.  And I see that you don’t want it.  I wish I could have brought you in a cup of tea.  Might you have smiled if I had?  Might you have seen who I am, beneath the data on your screen?

“I am sorry,” I say, my voice barely audible.  “I have a neurological condition and I am seeing you because you are a neurologist”.

If you are taken aback by my response, you don’t show it. Your head swivels back toward your screen. “Tell me more” you intone.  So I do.  I tell you my symptoms as succinctly as I can while you scan through my notes. “hmmmm” and “yes, I see” and “ah”. The nods as we cover each autonomic oddity. You do a neurological exam.  We sit down again. When you look at me, it is as if you are seeing a puzzle. You’re analysing the information you have gathered. You are searching for the placement and order of the pieces so you can see the whole. The pieces suddenly slot into place.  Satisfied, you rock back on your chair. Your next sentence is certain and clipped.

“You don’t have POTS”.

Do I suppose, at that moment, that a cardiologist might not suffice after all? I look at you, wondering what is coming next.  But I am not surprised.  I never really felt like POTS was the whole story, it just didn’t fully explain everything. So I wait for your view of things.

“You have Pandysautonomia.  Pan means ‘all’ and Dysautonomia, well you know what that means, a dysfunction of your autonomic nervous system.  It can’t be auto-immune, because your blood tests are normal*. It appears to be progressive. You’ll be happy to know that breathing is usually the last thing to be affected.  You’ll continue to decline, and then, eventually…”   You don’t say the next part.  You tell me to go an do the things with my family that I need to do while I am still able. Then, you clear your throat, raise your eyebrows and meet my eyes, properly. You push your chair backwards and explain that you have no need to see me again, you’ll send a letter to my General Physician.

You stand, and as I look up, you ask,
“-any questions?”  
and I see that I am dismissed. My inner roar of frustration is silenced, replaced with a whimper as I survey the decline and fall of my future. The small feral creatures of uncertainty that populate my mind have grown into monsters in a few of your short sentences.  I stand, thank you for your time and leave your rooms.

I sink into one of the waiting room chairs.  I am shaking from the effort of holding myself upright throughout the appointment. I’m devastated. I thought you might tell me that all I needed to do was x or y.  I was even prepared to try z. The stress of the interaction has sent adrenalin coursing through my blood stream.  I feel the usual battery of autonomic warning signs.  I wait it all out, half reclined, embarassed, listening to the hammering of my pulse between breaths. I am suspended there, in the waiting room I am desperate to escape from. I think about how you must not know how terrifying you are.  How scary your words. How easily you could have reassured me.

You are already seeing your next patient. The waiting room is so full of people.  I wonder how many of them are for you.  I wonder when you will get your cup of tea.  When you will get to escape from the burdens that crowd your clinic rooms. I wonder what you are thinking as you face that ninth patient.  And I wonder if you really love what you do anymore.

So yes, I am sorry.  I’m sorry you are busy. That the Medical Profession isn’t what it used to be. I’m sorry to be one of the many who demand yet another slice of your mental gifts, your time, your attention.  I’m sorry that you have lost, or maybe never had, the ability to connect with the person sitting in that chair across from you.  Your intellect is a beautiful gift. A valuable gift. Your education and years of training have positioned you to make a living from that intellect.  And just as any person (making a living in a service role) needs to have interpersonal skills; so do you.  If a McDonald’s cashier can afford me a smile on minimum wage, I kind of think you should be able to manage one. I’m sorry to be the one to tell you that, because I don’t think anyone else ever has, or maybe, no one since Med School. I wish I had been strong enough to tell you when I was in your rooms.

Take a break, doctor. Make some changes to your schedule. Fix the system, if it is the system that traps you in such misery. Take a look at the person behind the records, and the person in your mirror.  Both are beautiful, complex, intricate human beings. Try a small smile, a minute’s reprieve from your analysis and timeframes.  And if what ails you is exhaustion, it might be good to remember that you are not Atlas.  You shouldn’t need to shoulder the planet alone. A holiday might make all the difference, you could take one.

Remember that the words you tell your patients are always significant to them. But the things you tell them with your body language speak louder than anything you say in words. And if it all carries on this way, you are not only hurting your patients with your brusque and bullish manner, you are denying yourself one of the greatest joys of medicine. That magical interplay between doctor and patient, when your skills and their need combine to create a job well done.

It’s great to have a masterful intellect. But, did you forget?

First, do no harm.

*general auto-immune screening won’t necessarily show the antibodies implicated in autonomic dysfunction.

Future doctor_pateient(1)

__________________________________________________________

It’s a long time since that appointment. I write about it now, because I spent four years believing, yet fighting, what I was told. That I was on a progressive trajectory, that I would decline towards the ultimate end, that I should do what I want to with my family while I still can.  That is a pretty harmful idea to live with. Or a helpful one, depending on your perspective.  But it is certainly painful.

I’ve since had a much, much better appointment with the same neuro. I don’t hold a grudge anymore about that first appointment, but I think it is illustrative of the difficulties faced by chronically ill patients being seen through the hospital outpatient system. And also of the difficulties facing our chronically stressed doctors. Our bodies may be sick, but their system is also sick. My subsequent search for more answers to all my questions, eventually led me to an immunologist.  My response to immuno-suppression indicates that my problem is indeed auto-immune, and absolutely able to be treated with immune modulation therapy.  I don’t expect my neurologist to have known about auto-immune autonomic antibodies.  But I did expect him to be compassionate and want to help.  Perhaps to do some research with that clever brain of his. Or phone a friend!

What I am saying is that I would like to see a future where doctors understand that they have a wonderful opportunity to limit the harm their patient’s endure, simply by being nice.  I believe that Hippocrates was not only talking about physical harm in his oath “First, do no harm”.  I’d like to see a future where kind doctors are recognised and rewarded for the extra efforts they make with their patient interactions.  And where hospital systems improve the working conditions of all their health workers, including doctors and specialists.  And maybe, one where girls like me; the apologising kind, find the strength to say their piece when they should.

Have you had an interaction with a specialist like the one I talk about, above?  I’d love to hear about it.
Do you think something can be done about the pressures facing doctors in our modern medical systems?